Thursday, April 17, 2008

Perfect timing!

The other night, I received a call from a friend of mine. Unfortunately, she's had a very typical experience trying to get a Lupus diagnosis; she's been sick for over a year, and yet no doctor has been able to pinpoint or confirm what it is she's suffering from. The rheumatologist she's been seeing hasn't been particularly helpful thus far, but hopefully with further testing, the diagnosis will become obvious. Perhaps then she and her doctor can begin to collaboratively manage the excruciating pain she's been enduring.

One of the topics she and I discussed was how to handle the calls regarding the results of her blood tests from the doctor's office. For anyone who's ever had blood work done, you know how unexpected it is to receive the results, especially when they are positive, over the phone. You're usually left dumbfounded and speechless, unable to do anything but nod your head through the phone and take down the information you're being told. No questions, no comments. Just intake.

My friend was asking me what kinds of questions would be appropriate to ask when the calls come. Her last encounter with a nurse, over the phone, discussing blood test results, had not been very productive. In fact, the nurse couldn't even explain the results of her tests, and seemed defensive when my friend asked for further information. The nurse acted as though my friend was over-reacting, and that's the last thing you want when you're trying to rationally discuss serious matters pertaining to your own health! We discussed at length some of the options that might have elicited a better response from the nurse, most of which I'd not thought of in some time.

The very next morning, I received a call from the nurse at my doctor's office, calling to give me the results of a blood test (a CBC) I had taken the day before. Of course, I wasn't expecting the call, much less poor results, but here I was, being told that my cell counts were low. In fact, the doctor was prescribing additional medication to try and remedy the situation. I was shocked, but because I'd just gone through the exercise with my friend the night before, I had the wherewithal to ask the appropriate questions. Rather than just nod my head and agree to whatever was being said on the other end of the phone, I got all of the answers I needed. One point for the patient!

Here's what I asked and the answers (in italics) that I received:

What does it mean to have low blood counts? It means the blood cell counts are abnormally low compared to what they should be.

What were the ill-effects of having low blood counts? At this point the nurse had to put me on hold for about 10 seconds while she found out the answer to my question, which was: Extreme fatigue, anemia, other complications.

Wasn't iron deficiency more related to red blood cells? In this case, both cell counts are down, and ideally the medication will treat both.

Even as I bombarded the nurse with one question after another, she was neither rude nor anxious to get me off the phone. Kudos to her, and a big fat thank you to my friend for prepping me to ask all of the questions one should be prepared to ask in that exact situation!

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Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.